We’ve all seen the ads for the new Apple Watch were a user can generate an EKG and possibly see anomalies in heart rhythm. This is just one example of how new technology opens up a world in which generating data can come from any personal device.
The Office of the National Coordinator for Health Information Technology (ONC) defines patient generated health data (PGHD) as health-related data created and recorded by or from patients outside of the clinical setting to help address a health concern. To date, patient health information, such as activity level, biometric data, symptoms, medication effects, and patient preferences, has been predominantly collected by members of the care team in a clinical setting or through clinical in-home devices for remote monitoring.
The proliferation of consumer health technologies, such as online questionnaires, mobile applications (apps), and wearable devices, has increased the frequency, amount,
and types of PGHD available. These advances can enable patients and their caregivers to independently and seamlessly capture and share their health data electronically with clinicians and researchers from any location.
One of the challenges PGHD faces is patients not understanding the advantages of capturing and sharing PGHD with clinicians and researchers. Lack of access to PGHD technologies (we all can’t afford a new Apple Watch every year), varying levels of health and technology literacy and patient concerns about data privacy and security may prevent patients from participating.
Recently, both Aetna and United Healthcare started initiatives on either low cost or free devices to members. United Healthcare enrollee’s have the ability to “walk-off” the cost of the device over a six-month period, while Aetna and Apple have been in discussions to bring the Apple watch to it’s members.
Another challenge comes with the accuracy of consumer health devices. The quality of data captured using FDA-approved home health monitoring devices meets specified levels of accuracy. However, there is less clarity about the accuracy of general wellness devices that are not subject to FDA approval. A 2016 study reported some popular wearables are consistently inaccurate at measuring energy expenditure, such as calories burned, when compared to gold-standard measurements, such as metabolic chambers, which are control rooms where a person can reside for a period of time while metabolic rate is measured during meals, sleep, and light activities. Additionally, user authenticity is a concern as the risk of stolen device could result in a stolen identity or sharing of the device could result in inaccurate readings.
A look forward anticipates that digital health technologies will become more pervasive, offering more opportunities for patients to capture, use, and share their PGHD in support of health care delivery and research. The capture of PGHD alone is not sufficient to cause change within the health IT ecosystem. Joint action from across the ecosystem is necessary to overcome cultural, technical, and regulatory barriers. However, through collaboration, these barriers can be addressed, resulting in improved insights for clinicians and researchers and improved care for patients.